Skip to main content


The other night, I was talking to my grandpa on the phone like I do every Sunday night. As always, he asked, "How's that little Raya doing?" I let out a disgruntled little laugh and said, "Oh, she's doing just FABULOUS." and explained to him that none of the complications we were anticipating from her tube change came to fruition and how frustrated I was feeling that she could have so many problems for so long and then suddenly just be fine. I said, "This is too easy. It just seems like after everything we've gone through and everything we've had to do in the last year and a half, this should be harder or we should have to do something big in order to move forward. Grandpa, can it really be that easy?" He chuckled and said, "Well, I guess sometimes it just is, Brandis."

That conversation got me thinking about a story from the Bible. Naaman was "captain of the host of the king of Syria". He was a very important person, but he had the dreaded disease of leprosy. That made him unclean in the eyes of society. He heard that there was a prophet in Samaria who could cleanse him of his leprosy, so he took his chariots, servants and horses and went to see Elisha the prophet. Elisha sent a messenger to Naaman who told him, "Go and wash in Jordan seven times, and thy flesh shall come again to thee, and thou shalt be clean." (2 Kings 5:10) When Naaman heard that, he became angry. "But Naaman was wroth, and went away, and said, Behold, I thought, He will surely come out to me, and stand, and call on the name of the Lord his God, and strike his hand over the place, and recover the leper.
“Are not Abana and Pharpar, rivers of Damascus, better than all the waters of Israel? may I not wash in them, and be clean? So he turned and went away in a rage.” (2 Kgs. 5:11–12.)
Why was Naaman angry? He wanted something bigger. He wanted the pomp and circumstance that he felt he was worthy of. He wanted "a dramatic miracle at the hand of the prophet" rather than something as simple as bathing in a river seven times. (reference) Eventually, he humbled himself and followed the counsel of the prophet and was cleansed of the horrible disease.
I have done a lot of thinking in the past 5 days. After all of these difficult months filled with doctor appointments, therapy appointments, weight checks, blood draws, diagnostic imaging, cleaning up more vomit than I ever could have imagined, and all of the ups and downs that have come with all of that, can it really be so simple as changing her back to a regular G tube and her stomach can suddenly tolerate it? Shouldn't there be some grand event to bring everything to a resolution? Sometimes, it just IS that simple. In the book of Alma, it reads, "Now ye may suppose that this is foolishness in me; but behold I say unto you that by small and simple things are great things brought to pass; and small means in many instances doth confound the wise.
And the Lord God doth work by means to bring about his great and eternal purposes; and by very small means the Lord doth confound the wise and bringeth about the salvation of many souls." (Alma 37:6-7)
Maybe all of the things we've gone through up to this point ARE the "grand event" that I've been feeling like we needed to have, or maybe I've just gotten so used to the chaos that calmness is uncomfortable for me now. And maybe something as small and simple as feeding Raya through her intestine for 9 1/2 months was great enough to allow her stomach to prepare to digest food like it should. Why? We may never know. Sometimes things happen (good or bad) with no explanation.

As much as we would like explanations, the fact of the matter is that God doesn't HAVE to explain Himself to us. He has reasons for everything but that doesn't mean that we always need to understand or even know those reasons right away, and we may never know them in this life. It takes a lot of humility to accept that, which is something that I am obviously still working on. However, I believe that if we take what we are given with the knowledge and faith that it is given to us by God for our good, that faith will be a catalyst for us to learn things about ourselves that we wouldn't have otherwise been able to learn. During that journey, we will meet other people who are starting out on a similar road and we will be able to help them in ways that no one else can because of the experiences we have had.
This is not to say that I am completely "over it". I still would like to understand what has caused all of the pain & suffering she has experienced during her 20.75 months of life and it still bothers me that the mystery ailment seems to have resolved itself. I still have moments where I look at her (like while she's standing on the kitchen table again, shoving somebody's abandoned lunch in her mouth, which there is no chance of her chewing and swallowing) and think to myself "WHAT THE HECK IS HER DEAL??"

The fact that she has done well over the past 5 days is great, but reality is that there is always a possibility of certain complications with G tubes, so although the worst is probably over for Raya, there will probably still be bumps in the road. Overall though, we really are thrilled at the progress she is making and especially the leaps and bounds she has made over the past 2 months. I have even started to allow myself to entertain thoughts of Raya being able to go to kindergarten without a feeding tube. It would be fine if she still had it then, but I'm starting to have a little glimmer of hope that maybe she won't.
She made her grand return to occupational therapy today. I say it was a grand return because she was in desperate need of OT. She's been a big ol' sensory mess for the last 3 weeks. After her giant hour long meltdown at PT on Friday, I was afraid she'd do a repeat performance today but she did great. She was a little bashful at first but by the time we got halfway through the session, she was playing her little heart out and happier than I've seen her in 3 weeks. She even WILLINGLY crawled through the little pop-up tunnel that normally sends her into frantics and had a smile on her face the whole time. It was obvious that all of the things her therapist did with her today really helped her to feel better and I'm SO glad we're back into our therapies.
We also got to meet our new feeding therapist today. We have one that we've been seeing since Raya first started early intervention services when she was about 5 months old, but she's so busy right now that she can't come more often than every other week. Luckily, the clinic where we do OT at had a feeding therapist (who I've heard great things about) who happened to have an opening for home therapy every other week, so we're going to alternate weeks between the two therapists. I'm really excited about having more feeding therapy now that Raya is finally at a point where she's ready to be pushed a little more.


Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …